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Question for Sue!

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Posted 6/25/2013 10:31 PM (GMT 0)
I could probably just message you directly but figured I'd post here to share info for others that may search in the future.

I think your symptoms prior to the jpouch were somewhat similar to mine. Most of my UC was limited to proctitis for the bulk of the years I've had it. The last few years it has progressed to left sided UC but in general I've always had inflammation in the rectum whenever I had symptoms. Early on it was easily managed with Canasa. Later on it ended up being a combination of other rectal meds since the canasa didn't reach far up enough according to my GIs, although it's hard to say if the canasa was or wasn't working for the areas it reached.

With the Jpouch, I know at Cleveland clinic and other places, stapling seems to be the standard and is suggested for improved continence. Should I be concerned with this method? I know musectomy(sp?) Can be done in some cases but I worry that I'll have continence issues (I recall reading you had it done and were fine with continence. Just not sure if that is the norm). Thanks!
Posted 6/26/2013 12:59 PM (GMT 0)
Yes, my disease was primarily rectal, although before having surgery it did progress to the the left side. My brilliant surgeon did a mucosectomy and a 'hand-sew'. Initially I had some continence issues (only at night) but those were resolved with a rectal PT. The diagnosis was trauma to the sphincter due to surgery. That was 12 years ago; I've been fine ever since. I think you will want to discuss the mucosectomy with your surgeon; my understanding is that not many perform it. My surgeon had done over 2000 jpouches, but only 6 mucosectomies.

Sue
Posted 6/26/2013 2:55 PM (GMT 0)
One other thing that came to mind. My understanding is a lot of UC folks start out with UP and it has the potential to slowly progress. Wouldn't this imply that the majority of people with UC had more inflammation over the years in their rectum versus other areas?

I guess I am trying to see when does it make sense to get the mucosectomy vs not and if people that started out with UP that didn't get it, still do fine without cuffitis? These are all questions I am going to ask at surgical consults of course.

I'm a bit worried since I am going to see Dr. Remzi at Cleveland Clinic for a consult and while I bear his experience and expertise is top notch, from the studies i'be seen him post online, his preference is strongly towards the stapled technique.

One other thing I don't see a whole lot of mention of is the combined mucosectomy and stapled technique. When I was in the hospital there was a surgeon I had met with. I opted to not go with him since he's done only 30 j pouches. But he mentioned that he typically does mucosectomy combined with a hand sewn/reinforced with staples technique. Anyone ever hear of this?
Posted 6/26/2013 3:18 PM (GMT 0)
With all due respect to Sue and her surgeon and anyone else with a great outcome with a mucosectomy and handsewn anastomosis (of which there are many people), the data pretty clearly shows that double stapling improves quality of life and outcomes significantly. A study that I found really interesting shows that even when you compare patients with handsewn and mucosectomy vs. patients with doublestapled who have chronic inflammation in the ATZ (anal transition zone -- this is basically cuffitis), quality of life is STILL better for the patients who have chronic inflammation than for the patients who underwent a mucosectomy (presumably to avoid chronic inflammation): www.ncbi.nlm.nih.gov/pubmed/18847636

There's a Cleveland Clinic study with almost 4000 subjects which also shows a statistically significant improvement in QOL for double stapled over handsewn.

Anyway... that's my two cents. Obviously the statistics don't mean anything if you end up in the minority that's unhappy (for any surgery) but the odds are better without mucosectomy. When it is still performed it's usually for patients who had rectal cancer or dysplasia.
Posted 6/26/2013 3:21 PM (GMT 0)
Is cuffitis something that occurs in the minority or a given with proctitid as a history? Is it manageable? Recurrent/in episodes? Honestly. If all I had to do was a Canasa suppository to treat it, that's not too bad for me. I am an ace with suppositories and find them so easy to use lol.
Posted 6/26/2013 3:26 PM (GMT 0)
It is usually very treatable. The majority of cases respond to a week of Canasa or similar. It's very rare to use a systemic therapy to treat cuffitis. A very small number of refractory chronic cuffitis cases lead to pouch failure, but pouch failure is much more commonly caused by chronic pouchitis.
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